Commissioning for Quality Care at the End of Life: Meeting the needs of diverse groups and those living in vulnerable circumstances

• Ruth Passman• Caroline Humphreys• Dr Sue Hinder• Kevan Larkin• David O’Brien• Kevin Malthouse• Iman Rafatmah• Dr Bee Wee

“Not even the apparently enlightened principle of the ‘greatest good for the greatest number’ can excuse indifference to individual suffering. There is no test for progress other than its impact on the individual.” Nye Bevan: In Place of Fear (William Heinemann Ltd, London, 1952), p. 167-8.

End of Life Care preferences

People from protected groups

People in recovery

People living in challenging circumstances

Research interviews conducted by Dr Sue Hinder

What does good look like?

Attending to a person’s physical, social , spiritual, psychological and emotional needs is what keeps a person comfortable

Everyone feels the needs of family and carers are important to the person who is at the end of life.

Call it what you like e.g. Personal Care Plan + Dave’s wishes or Maggie’s Care Plan or Information for You and Your Relatives for Your Comfort in the Last Days of Life.

Encourage everyone to make a Plan and make the benefits clear to everyoneYou should be able to make a Personal Care Plan at any time in your life

Some need to put their Care Plan on CD or DVD. People who are Deaf or deafened may require British Sign Language interpreter or alternative communication support. Others, with a learning disability, may need an Easy Read version We need enhanced End of Life care Plans for young people and their parents

Some people want a health professional to help them complete a Personal Care Plan

A Personal Care Plan can be especially helpful when the person has no family or carers

People often want more information in the Plan on Lasting Power of Attorney

The Personal Care Plan should include information on the standards of care you can expect.

“I received all this care but I wish I could have known all this beforehand” Participant 14 (Carer, South Asian heritage, experience of end of life care)

Checking on medication and comfort levels must be done in negotiation with the person or their family and carers.

“I think there needs to be for each patient, for example, a signal made, when they are not able to use voice, put a finger up or (demonstrates knocking) let them know in a different way that they need something changing… deaf users may not be able to use their voice. “ Participant 6 (Profoundly deaf, disabled, South Asian heritage)

People felt the use of advocates was important.

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Kevin Malthouse

“Patients should be told that they have access to a qualified independent advocate if he or she is not happy with the family who are looking after them” Participant 16 (South Asian, single, born abroad)

 

It was suggested that the words “family and carers” should be changed to “the people who care for you” because some gay and lesbian, bisexual and transgender people aren’t involved with their families as may be true for others

The Plan can include important information about the culture people come from - what they must and must not do, e.g. not reveal any diagnosis information such as HIV Status to family.

Kevin Malthouse

Nobody wants a dying person to be uncomfortably dehydrated at the end of life

“It’s awful, I know from the experience of watching my father, it’s an awful thing to watch somebody ‘dry out’…I was putting teaspoonful’s of water into his mouth and even though he couldn’t talk to me, he was so grateful…..I mean that’s basic surely, SURELY!”

Kevin Malthouse

Family and carers should be shown how to make the person comfortable but health professionals have to take into account their individual actions.

Extra care should be taken when a family member or carer is in recovery.

There needs to be extra hours of care provided for people with a learning disability who live in group supported housing

Most people want an Out of Hours doctor who knows them

Kevin Malthouse

End of Life Care at Home 

Some people who have experienced long term care want to include health professionals in the group of people to help make decisions

People from certain generations, cultures and groups are accustomed to doctors making all decisions and can find ‘personal choice’ confusing.

It’s important for some people to name people who they don’t want to be involved in discussions on their care. This may be vital for some lesbian, gay, bisexual and transgender people as an example, where relationships with family may have broken down but is a consideration for all.Kevin Malthouse

Communication with health professionals is a two way process – people want to be listened to, they have important things to say.

“These should be discussions, I don’t want telling” Participant 10 (Parent of adult with severe physical and learning disabilities)

“Personal skills and communication can be overlooked a bit - you feel safer being treated by somebody who can talk to you.” Participant 12 (Young person, long-term condition)

Everybody felt that all staff should have training in End of Life CarePeople need to know what to do if they are not receiving the standard of care they should

“There should be something in the plan to tell you what to do if you are not being treated respectfully.” Participant 2 (Older person, severely visually impaired)

Everyone agreed a Shared Information Folder for End of Life Care would be very helpfulA lot of people don’t understand what palliative care is

“I had to look in my dictionary and look on Google because I couldn’t understand it” Participant 19 (Refugee)

What will an End of Life Partnership do? Its Key Purpose

• To lead, disseminate and facilitate excellence and best practice in palliative and end of life care; To influence and enable our communities to live and die well, supported by the health, social and voluntary workforce. To develop an integrated approach to education, service development, public health and research. patient, public, clinical influence and engagement

Kevan Larkin. Cheshire Living Well, Dying Well Programme steering group member, Chair of Future NW Forum & Health working group lead.

Assumptions must not be made about a person’s religion – an Asian person may be atheist.

“Support for people without religion must be carefully considered, as the presence of people of faith, when you are facing death, can be both insensitive and disturbing”. Participant 20 (Humanist Officiant)

Hospitality?

How does migration, cultural and linguistic difference affect the dying? Iman Rafatmah

St Christopher’s Hospice London

“ a working community of the unlike”

Cicely Saunders credits her inspiration for the Modern Hospice to dying Polish Jew and refugee David Tasma

Living and Dying in Challenging Circumstances

Their age & gender 2/3 of people die 75+ 74% of women & 58% of men die aged 75+ 1 in 6 deaths are people aged 90+ 2008: 4 million people are aged 75+ 0.4 mill aged 90+

Projections to 2033 7.2 million 75+; 1.2 million 90+

NEoLCIN 2010

You are more likely to die in hospital if you are... A man (55% men 52% women died in hospital in 2010) OR Over 75 (57% of 75-79) but not over 90 (48%) OR Live in a deprived area (61% from most deprived quintiles of LA areas v 54% from least deprived, 2007-9)

“ The choice of where you want to end your life and with whom is , by definition, removed from you in a secure setting” David O’Brien. Hon Staff Researcher .Prevention of Suicide in Prisons. University of Manchester / Recovery Champion

“evidence that people who are sleeping, or have slept, rough and/ or are living in hostels and night shelters have significantly higher levels of premature mortality and mental and physical ill health than the general population.” (Healthcare for single homeless people, Department of Health, 2010)

It comprises of three main stages, which are underpinned by the foundations of strong leadership and effective co-production: Planning: Planning services which meet national

standards and local ambitions, by combining knowledge of existing service performance, population needs and emerging best practice / new approaches to care delivery.

Securing services: Securing the services identified in the commissioning plan, using the most appropriate combination of contracting mechanisms that will deliver the best quality and outcomes with the resources available; and

Monitoring: Monitoring, assessing and, where necessary, challenging the quality of services; and using this intelligence to design and plan to systematically improve services for the future.

Commissioners need to ensure the services they commission:

Are continuously improving Deliver the best possible quality and outcomes

for patients Meet physical and mental health needs Reduce health inequalities

Service Specifications - Pilot

Service Specifications - Pilot

• Five draft non-mandatory service specifications: End of Life Care; Diabetes; Self Harm; VTE; heavy bleeding.

• Based on NICE Quality Standards and commissioning guidance• Involvement of National Clinical Directors• Shared with CCG colleagues and others• CCGs invited to volunteer to test the specifications• Pilot: February – end of March 2014• Evaluation: April 2014

“What you take from today, influence those around you and embed into the system, values and cultures will undoubtedly improve the care delivered.The experiences of the patient of being able to be who they are, with the people they love in the place they want to be in their last moments can be no better reason for improving our understanding and taking action on the differing needs and requirements of individuals.” Scott Durairaj Head of Patient Experience Mental Health and Learning Disability; NHS England

Resources

http://www.evidence.nhs.uk search for end of life care equality toolkits on :Care of children and young people beforedeath, at the time of death and after deathEnd of life care for adults The route to success in end of life care – achieving quality for lesbian, gay, bisexual and transgender people Care towards the end of life for people with dementia Research briefing 40: End of life care for people with dementia living in care homes End of life care for adults: quality standard End of life care - achieving quality in hostels and for homeless people: a route to success Cultural Issues in End of Life care. http://cultureeol.wordpress.com Death and the Migrant. Yasmin Gunaratman

http://www.mariecurie.org.uk – Who We are BAME palliative care